As the Founder of a national pediatric cancer nonprofit, I didn’t really expect the current government shutdown to bring awareness to the cause I champion. But then, The Atlantic ran a story on October 1, heralding the “saddest paragraph of the government shutdown.”

The article revealed that, due to the shutdown, 30 children per week scheduled for clinical trials (many of which have cancer) at the National Institutes of Health would not receive treatment. Why? Because the NIH is federally funded, and over 75% of its services are now closed due to the shutdown. So you’re saying that kids’ lives are hanging in the balance due to lack of government funds? Readers were irate – With blood boiling, they found this fact to be entirely unacceptable. But it wasn’t news to me.

Annually, less than 4% of the National Cancer Institute’s budget goes towards research for all childhood cancers combined, which happens to be the #1 disease killer of children in our country. Flip that stat around – over 96% of national funding goes towards adult cancers, leaving our nation’s future and most precious resource with not nearly enough funding for adequate innovation. So are we sitting around, boiling mad, waiting for the government to provide more funds for children? Not for one second.

In 2007, when our 2-year-old son Liam was diagnosed with stage IV cancer, our oncologist told us, “Kids with cancer don’t make headlines.”

That same day, the headlines were filled with news of White House Press Secretary Tony Snow’s cancer diagnosis. Mr. Snow made headlines because he had lived long enough to make a difference in the world. Tragically, children do not have the opportunity to make that impact when they are saddled with a cancer diagnosis. Hence, the lack of headlines featuring kids.

Soon after Liam’s diagnosis, my husband and I learned of a promising new therapy in development at the very same cancer center where Liam was receiving treatment. Only one problem: it needed funding to move from the research lab to the clinic where it would be administered to children. That was the moment we learned there is simply not enough funding from the government to move all research along. And so the cancer center – filled with some of the top oncologists in the world – was depending on individuals and small foundations to fill the gap to help make the potentially life-saving treatment available for children.

My husband and I could not stand by, waiting for government funding. We also refused to wait for others to raise the money. Instead, we started a foundation called Cookies for Kids’ Cancer. Our simple mission: to inspire individuals to “Be a Good Cookie™” and raise funds for childhood cancer research.

In five short years, our grassroots supporters that hail from all 50 states and over 4,500 cities world-wide have rolled up their sleeves, raised funds, and ultimately helped fund more than three dozen research projects, with half a dozen now in clinical trials.

Our sense of urgency remains driven by the fact that in August of 2011, we learned that the same promising research in need of funding that sprung us to action was being moved into clinical trial. Our funding helped. It was a small victory in a huge battle. But the taste of success was bittersweet, as it came just 7 months after we lost our precious Liam to this cruel, relentless disease. The treatment that we worked for came to be – just a bit too late for him. We never want another family to feel our endless sense of loss combined with the aching knowledge of what might have been.

So back to those 30 children making headlines while we wait for the federal government . . . if writing a check from funds raised by supporters of Cookies for Kids’ Cancer would help, I would do it right now. As a matter of fact, we tried to cover the cost of treatments for those children. But it’s the federal government, so it’s not quite that simple.